Whether you are providing palliative care for someone with a painful chronic condition or for someone actively dying, the rewards that come with caregiving are real and varied.
According to a study at the Johns Hopkins School of Public Health, most caregivers say they developed a better relationship with the person they cared for, gained a heightened appreciation of life, found hidden strengths, and felt a sense of accomplishment.
When Norton, Ohio, residents Mark and Dalia Spisak decided to care for Dalia’s father, who had congestive heart failure and dementia, Mark put his career on hold. Working with the local palliative care service, he became his father-in-law’s caregiver.
“This was something my wife and I needed and wanted to do. When we looked back, we didn’t want to have any regrets about his care.”
At the same time, the responsibilities and challenges that come with caregiving are also real, varied, and stressful.
Caregiving: How Stressful?
Stephen Zarit, PhD, professor of human development at Pennsylvania State University, has been studying caregivers for more than 30 years. He says that between 40% and 70% of caregivers are significantly stressed.
About half of these seriously stressed caregivers “meet the diagnostic criteria for major depression,” he adds.
Recognizing Caregiver Depression
Caregivers may not realize they are becoming depressed, says psychologist Michael Williams, senior program associate at Wellness House, a caregiver support center in the Chicago area.
“Depression builds over time due to the physical and emotional symptoms the caregiver experiences,” Williams says.
“You don’t become depressed because of the symptoms; you become depressed because they are extreme and persistent,” says Philip Higgins, MSW, director of palliative care outreach at Boston’s Dana Farber Cancer Center.
Symptoms of major depression include:
Sad, anxious, or “empty” feelings
Feelings of hopelessness or pessimism
Irritability, restlessness, and anxiety
Feelings of guilt, worthlessness, or helplessness
Loss of interest in once pleasurable hobbies or activities, including sex
Fatigue and decreased energy
Difficulty concentrating, remembering details, and making decisions
Insomnia, waking up during the night, or excessive sleeping
Overeating or appetite loss
Persistent aches or pains, headaches, cramps, or digestive problems that do not ease, even with treatment
Thoughts of suicide or suicide attempts
People caring for a loved one with a terminal illness should add “feelings of anticipatory grief” related to a sense of impending loss to the list, says Ruth Steinman, a psychiatrist at the Abramson Cancer Center at the University of Pennsylvania in Philadelphia.
“This is a symptom where a palliative care service can be especially helpful,” Steinman says.
Handling Caregiver Depression, Burnout
Recognizing that the stress you are experiencing can sometimes lead to depression is the first step to preventing it — and burnout.
To take that step, talk about your feelings, frustrations, and fears with the palliative care team’s social worker or mental health professional. Talking helps you understand what’s going on for you and for the person in your care. It helps you come to grips with the fact that you are not in total control of the situation.
“When caregivers understand that, there can be a tremendous sense of relief that allows them to set more realistic goals, including goals for when they are no longer caregiving,” Steinman says.
In addition, to keep depression at bay:
Maintain a life outside of caregiving. Stay connected to friends. Don’t give up your daily routines. Maintain your health. Get regular check-ups, eat a balanced diet, and exercise. “It wasn’t until I was hospitalized that I started thinking about my own health. That was a real wake-up call,” says Nancy Knitter, who is caring for her husband with Parkinson’s disease in their Rochester Hills, Mich., home. Exercise. It un-kinks tense muscles, revs up the cardiovascular system, and floods the brain with feel-good chemicals, such as endorphins.
Use simple de-stressing techniques: deep breathing, muscle relaxation, meditation, and self-massage. And laugh. “People don’t think of humor as a way to cope with stress, but they should,” says Irv Ginsburg, of Ooltewah, Tenn., who cared for his wife, Nada, while she had brain cancer. Join a support group. In support groups, you validate your role as caregiver, voice your fears, vent your frustrations, and learn coping strategies and techniques. Hospitals and most disease-specific organizations sponsor groups. If you can’t get out to a group, many organizations sponsor online support groups, and the Veterans Administration has a free caregiver support line (855-260-3274).
Ask for help from the palliative care team, family, and friends. Delegating lessens stress and provides ways for others to show they care. “People want to help, they just don’t know what needs doing,” says Helene Morgan, MSW, clinical social worker in the pediatric palliative care program at Children’s Hospital Los Angeles.
Use respite care. Organizations — home health agencies, adult day care programs, nursing homes, faith groups, Area Agencies on Aging, the Veterans Administration — and friends can provide short breaks that lessen stress and allow batteries to recharge. “Using respite care didn’t just help me with the caregiving, it helped my wife and me have a social life,” Spisak says.
And finally, if you think you are becoming depressed, talk to the palliative care team’s mental health professional or your doctor about treatment for depression.